To Rashpal, Danielle and the 72 friends that I’ve lost: Emma's story

Our supporter Emma recently gave a powerful speech at the UK Breast Cancer Research Symposium back in July to explain her experience of secondary breast cancer and dedicated her words to friends she has lost to the devastating disease.

As you know, my name is Emma. I’m 38 and I’m a single mum to three wonderful children - Gracie who is 16, Louis who is 11 and Daisy who is 9.

On 2 May 2014, my life changed for forever. But first we’ll rewind a few months.

I was in the bath when I found my first lump. I was referred to the breast clinic by my GP and was seen within two weeks.

I had a mammogram and an ultrasound scan. The consultant told me it was highly unlikely to be anything sinister because I was young. I was relieved when I got the call to say it was all-clear.

Over the next couple of months I was poorly on and off, and having erratic periods. I also lost a lot of weight. I found a second lump underneath the original one that was still there and again I was referred to the breast clinic.

I had another mammogram and ultrasound, and this time I had a needle biopsy. Again, I was told that I was too young for it to be cancer, that breast tissue is much denser in young women. I went home feeling like I’d overreacted and wasted everyone’s time.

The diagnosis of secondary breast cancer

I never got the all clear phone call. Instead four days later on the 2 May I was rushed to A&E in an ambulance after haemorrhaging at home. I was in a bad way. I was admitted to a ward and at 6pm, the consultant who had told me that I was too young for cancer, sat me down in a small room and told me that actually, I did indeed have breast cancer.

The next few days passed in a blur. My fiancé was flown home from Afghanistan where he was on a six month tour with the army. I had numerous MRI and CT scans, a hysteroscopy and a bone biopsy.

Five days after my primary diagnosis, I was told that my cancer had spread to my bones. I had secondary breast cancer. It was incurable.

I remember that day well. I’d been pushed to the outpatients in a wheelchair by one of the ward nurses, my fiancé was with us. We sat in a little room waiting for ‘Dr Doom’, the nickname we’d given our oncologist as every time we saw her, she gave us bad news.

When she told me it was incurable, I wasn’t shocked; in fact I laughed. It was unreal but actually deep down I had known all along.

I’m not sure how, but I found an inner strength. I was not going to give up without a fight. My life had changed in an instant. I was looking at the world out of different eyes.

Treatments and telling the children

During the three weeks I was in hospital, I had lost a lot of blood and needed 12 blood transfusions. I also needed three platelet transfusions as my count had dropped to seven.

I didn’t see my children for just over two weeks and I’d never been away from them for that long before.

On 23 May 2014, I had my first chemo – epirubicin. I was petrified and upset. I’d been warned about the side effects; sickness, hair loss, metal mouth, diarrhoea, extreme fatigue, that’s just to name a few. I had to have a smaller dose of chemo on a weekly basis as I was too poorly to cope with the full dose.

After seven doses of epirubicin, a routine echo-cardiogram revealed a couple of problems with my heart. I had a small hole in it and the left side wasn’t pumping properly. I was taken off epirubicin and put on a more heart-friendly chemo called paclitaxel.

I still had the smaller weekly dose and I think this greatly helped with the side effects. I was extremely tired and suffered with the occasional dodgy tummy. I had my chemo on a Monday so I could rest while the children were at school. By the weekend, I was back to feeling almost normal and could be the Mum that they needed. I didn’t want them to see me looking ill.

I remember sitting the younger two down and trying to explain to them that my hair was going to fall out. No one can tell you how quick this might happen. I had no idea if the morning after my first chemo I’d wake up bald. I told the children that I needed chemo medicine to make me better but it would make my hair would fall out. I told them that I would wear a wig and Daisy laughed because she thought that it would blow off in the wind. I didn’t tell them the severity of my illness and Gracie was preparing for her GCSEs. I wanted to protect them from it as much as possible and keep life as normal as I could.

After chemo finished, I was given a four week break before starting radiotherapy. I had 15 sessions and again was very lucky when it came to the side effects. I’d been warned about burns to the area but I hardly even went red. I put it down to the quarter Maltese in me. Again I suffered with fatigue but this didn’t really hit until the end and lasted a good few weeks.

I sailed through both chemo and radiotherapy, but to be honest, this just makes me dread the next time. I doubt I’ll be as lucky.

Six months at a time

I now live my life in six month chapters between scans. I spend an hour in the MRI scanner and then have a two week break for results. This time is known as ‘scan-xiety’ – it’s important to keep busy but you can never turn off the worry.

So far, touch wood, I’ve had no progression. Then I start to live again and make plans, although never outside of the six month cycle, I don’t want to tempt fate.

Then as the next scan date looms, I start to wind everything up again and so it goes.

My life now consists of hospital appointments, treatment and medication. I go to the chemo suite every four weeks to have Zometa and although it’s a 15 minute infusion, it takes up a whole afternoon because I have to have my bloods done first, wait for them to be tested and the chemo suite is always busy.

I also have Zoladex every four weeks which is a type of hormone therapy. I’m in a medically induced menopause which brings its own problems. I’ve put on a fair amount of weight, it can affect my mood and I get occasional hot flushes and night sweats, although these aren’t so bad anymore as I can control them by cutting certain foods and caffeine.

Having a cancer diagnosis has really changed my life. I’ve found a new ‘normal’. The old me has gone. I have changed. I feel like I’m living a parallel life, it’s like I’m on the outside looking in. I feel like I’m bumbling along with no purpose. I have questioned the point of life.

I get bad days. I think about my lot and I wonder what I did to deserve this. I joke that I must have sinned in a past life.

In my world, we call these ‘waves of emotion’ and all you can do is ride it. Cancer impacts on so many areas - losing careers, trying to juggle side effects or appointments with childcare and for some, not being able to have children at all. It can also shatter relationships.

Secondary breast cancer is an invisible illness

Secondary breast cancer is an invisible illness. People remark on how well I look, even though inside I feel about 90. I’m constantly tired and by teatime, I’m done in. I’ve had to learn how to pace myself and if we have a family day out, I know that I’ll need at least two days to recover. I struggle with standing still for very long as well and have to check there’s seating if I go anywhere.

I also feel very alone. I do have friends but they just don’t get it. It’s hard to explain what’s going on in your head and I don’t want to burden them. I get most of my support from a Facebook support group called the Younger Breast Cancer Network or YBCN for short.

There are roughly 2,000 women all under the age of 45 with various stages of breast cancer and secondary breast cancer.

Living with secondary breast cancer is much more a mental challenge than a physical one. I think it’s the whole not knowing your fate that really messes with your head. Knowing you’re on borrowed time, knowing how quickly things can change. Life becomes a lot more precious, you don’t sweat the small stuff anymore, you have a bucket list full of things you want to achieve and everything becomes about making memories for the children. It’s important to make every second count.

Special occasions, such as birthdays, Christmas, starting or leaving school, all become emotionally charged events. Tears of relief for making it, tinged with tears of sadness wondering if you’ll make another. Every day you face these fears.

The support of the Younger Breast Cancer Network

I know that I didn’t cause my cancer – I was healthy, kept myself fit, never smoked and hardly drank. Cancer does not discriminate. Cancer does not care if you’re old or young. Myself and 1,999 other women on YBCN are living proof of that.

There are nearly 700,000 people living with or after a breast cancer diagnosis in the UK. 35,000 women are known to be living with secondary breast cancer and nearly 1000 women die every month from it.

In the two years I’ve been a member of YBCN I’ve seen 72 friends deteriorate and die leaving behind distraught families, husbands, parents, siblings and children. I asked my YBCN friends if there was anything they’d like me to include today.

The following paragraph comes from them.

Early diagnosis and good primary treatments are an important part of the armoury, but we need to be working much harder to make secondary breast cancer a chronic and survivable disease. To do this, we need to treat the individual and their particular breast cancer, not just breast cancer as a whole. We need to understand when and how cancer cells escape and spread.

Longer term treatment plans need to be established for those living with secondary breast cancer. We also need to find effective treatments for the 15% of women who are triple negative. At the moment, there are still no targeted treatments approved for this type of breast cancer.

This must change. Research is vital.

Why I chose to work with Breast Cancer Now

This is why I chose to work with Breast Cancer Now. I want to raise awareness about both breast cancer and secondary breast cancer. It gets such little press and little funding.

When I tell people I have secondary breast cancer, I have to explain what it is because no one ever knows and I’ll admit that I didn’t either.

I want to make women more aware of the signs and symptoms of breast cancer, and if one woman checks herself then I have achieved my goal. Two of my friends have been and had lumps checked, and they both said that if it wasn’t for me, they probably would have ignored it.

People call me inspirational but I’m not doing anything special. I’m no different to any of my secondary friends. We’re all just trying to carry on with our lives as much as possible and not let the breast cancer diagnosis define us.

Breast Cancer Now hope that by 2050, no one who gets breast cancer will die from it and with your help we can achieve that.

I’d like to dedicate my speech to Rashpal, Danielle and the 72 friends that I’ve lost.